Tuesday, December 15, 2009

Update

I find myself apologizing for the lack of posts alot lately, but honestly, we're trying to stay so low key around here that I feel there's just not alot to say. Then, I wait too long and the post turns crazy long! Oops.

The garage sale went very well, raising about $1500 for Keegan's COTA account! This was much needed, as Boston literally drained his account (and then some). We cannot thank everyone who helped or donated items (or just money) enough for your efforts. We hope to be able to do another fundraiser of some type next spring to help bolster Keegan's reserves for next year. Keegan's COTA "campaign" is only considered "active" for two years, but money can be donated to his account for his lifetime. As you can see by clicking the "donate" tab above, we have almost met 75% of our original fundraising goals. COTA has been a lifesaver for us the last two years, helping us with all transplant-related expenses. We know firsthand what a blessing that kind of help can be, and we are so glad that every donation made to Keegan's account enables other families in need to be cared for before, at, or after transplant. COTA is able to guarantee that all funds donated to Keegan's account are available to him as needed, but it also is able to use those funds to help cover the needs of families who may be unable to fundraise immediately. So when we thank you for donating to Keegan's COTA account through events such as the garage sale or just the goodness of your heart, please know that we are also thanking you on behalf of all the transplant kids that COTA helps - families in hospitals far away from their homes, families without insurance to cover the millions of dollars associated with a transplant, families who have lost jobs to be with their ill children. Transplant is a rough road, and it helps immensely to know you don't have to go it alone. Thank you, thank you, thank you for helping us on this road!

Keegan is still at home - for a record 4 months by next Monday! He finally seems to have kicked the runny nose plaguing him since Thanksgiving. As highly, highly annoying winter lock-down is, it seems to be working!! I tell ya, I'm SO looking forward to Keegan getting some new toys for Christmas - I'm getting tired of what we have now! Ha! He has a GI appointment on Thursday, and he has his big cardiology appointment next Monday. We won't run labs again until then. Still waiting to start his more structured spech therapy at Baylor; we'll hopefully get that scheduled soon. He's used all his covered therapy visits through our private insurance, so we have to wait for them to deny it, then for Medicaid to review and approve it. He's still doing well in occupational therapy, but I wish I could say the same for feeding therapy. His medical feeding issues and typical two-year-old behavioral issues seem to have clashed and come to a head. It is very frustrating for us because he has taken to not eating at all some days, and when we try to follow the "behavior modification" guidelines, it very quickly becomes a negative experience. The other frustrating aspect is that it's become very apparent that if he doesn't eat by mouth (just his specialty formula by tube), his GI system is doing SO well (great diapers)! Then the minute we add the food back in, he's right back to the not so great. We'll be discussing it with his GI doctor this week, and I just pray that his weight hasn't suffered from it.

Last post, I told you that Children's had contacted us about using Keegan's picture for donations this Christmas. Well, the e-cards are up! This Christmas, if you would like to make a donation to Children's in honor of someone, you can choose to send an e-card with Keegan's adorable 1-month picture! The photo was taken at Keegan's post-transplant discharge conference in October 2007. Click HERE to see the e-card...and of course, to send one! "Make life better for children" this Christmas!

In other family news, my sister, Alex, had a successful but radical knee surgery today (I think it was called a distal femoral osteotomy but don't quote me, plus some fancy plasma-like substance where her cartilege should've been). Thank you to those of you who follow us on Twitter or Facebook and kept her lifted up in prayer today. The doctor said the surgery went absolutely beautifully! She will be on crutches for at least six week and is facing a very long recovery period. Still, we are hopeful that today's procedure will give her over 10 years before needing a total knee replacement. All this at the ripe ol' age of 27!!

We will post again after cardiology on Monday. Until then, we are trying to enjoy the advent season in preparation for Christmas. Did you know the word "advent" comes from the Latin adventus, meaning "coming"? During this time we are waiting on the coming of the Lord, Jesus...his birth, but most importantly, we are reminded that we are waiting on the Second Coming of the Lord and to prepare ourselves spiritually it. I find so much meaning in the "waiting" of advent. We are constantly reminding ourselves that in our yearning for Keegan to be healed, we must wait on the Lord's timing. It is His plan that matters, not ours. We are waiting to find peace and rest in Him. But because we are most importantly waiting for His final coming, we must strive daily to put our hope and trust in Him, to lay our troubles down before Him, to be His hands and feet here to others. What are you waiting on the Lord for now? We pray that you find it in Him this Christmas.

We wait in hope for the Lord; He is our hope and our shield.

In Him our hearts rejoice, for we trust in His holy name.

May your unfailing love rest upon us, O Lord, even as we put our hope in You.


Psalm 33:20-22



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